Perceptions of Illness Control, Coherence, and Self-Efficacy Following a Web-Based Lifestyle Program for Multiple Sclerosis: A Qualitative Analysis of Semistructured Interviews

Abstract

Background: Evidence suggests that illness perceptions held by people living with multiple sclerosis (MS) impact affective distress and physical health outcomes. In a randomized controlled trial, we developed 2 MS Online Courses-the standard care course and the intervention course (IC). The IC was adapted from an evidence-based lifestyle program. Modifying lifestyle risk factors offers an opportunity to impact illness perceptions. Research on illness perceptions in people living with MS has focused predominately on quantitative methods.

Objective: This study aimed to explore the experiences and health outcomes of randomized controlled trial participants, including individuals' perceived changes in attitudes toward MS and their health (ie, illness perceptions).

Methods: Qualitative responses provided by 38 participants (22 in the IC and 16 in the standard care course) were derived from semistructured interviews 1 month after completing the MS Online Course. The impact of course engagement and lifestyle modification on illness perceptions was explored using inductive thematic analysis.

Results: Themes of changes in illness perceptions were most prominent in the IC arm. Qualitative responses from 22 people living with MS informed the development of three themes: "self-efficacy for disease management," "personal control," and "illness coherence."

Conclusions: Findings provide novel insights into the formation and modification of illness perceptions. Lifestyle modification may serve as a valuable adjunct to clinician-administered therapies, improving the sense of personal control over MS, illness coherence, and self-efficacy for disease management.

Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12621001605886; https://tinyurl.com/2vyve9p9.

International registered report identifier (irrid): RR2-10.1186/s12883-023-03298-0.

Keywords: MS; disease management; health behavior; illness coherence; illness perceptions; lifestyle modification; multiple sclerosis; personal control perceptions; qualitative; self-efficacy; thematic analysis.